利用复杂护理网络：资源有限环境中患者与家庭应对姑息治疗的民族志研究
Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting
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影响因子:3.9
分区:医学2区 / 卫生保健与服务2区 医学：内科2区 公共卫生、环境卫生与职业卫生2区
发表日期:2025 Jan
作者:
Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L Willems, Jeannette Pols
DOI:
10.1177/02692163241287640
摘要
非传染性疾病负担增加和人口老龄化导致姑息治疗需求上升。然而，在如印度尼西亚等资源有限的环境中，尤其是农村地区，专业姑息治疗不足。关于姑息治疗导航的具体情况知之甚少，既往研究多集中在癌症护理导航上。制定本地化策略至关重要。本研究旨在探索患者及家庭如何导航姑息治疗及其遇到的问题。采用深入访谈和观察的民族志研究，采用反思性主题分析法分析数据。在印尼 Banyumas地区，对49名参与者（患者、家庭照护者和卫生专业人员）进行访谈，并观察了12个患者家庭单元。结果显示，患者和家庭通过多种策略进行姑息治疗导航：①自助帮助，②利用补充替代医学，③避免讨论心理问题，④动员富有同情心和倡导的社区，以及⑤通过宗教实践寻求精神照护。尽管资源有限，参与者仍通过复杂的护理网络进行导航。系统性障碍和公众对姑息治疗认知不足是主要问题。地方基层卫生中心可通过强化现有项目和动员社区健康志愿者，在姑息治疗中发挥潜在领导作用。建立共同的社区护理理念，有助于增强合作与支持。
Abstract
The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial.To explore how patients and families navigate palliative care and the problems they experience.An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis.Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia.Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices.Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.